Understanding Complex Self-Injurious Behaviours

Photo by Trym Nilsen on Unsplash

Tyla Frewing, BCBA-D

Sarah Pastrana, BCBA-D

Elsbeth Dodman, H. BA, Autistic Self-Advocate

What is Self-Injurious Behaviour?

Definition of Self-Injurious Behaviour

Self-injurious behaviour (SIB) is non-suicidal, self-directed behaviour that causes or has the potential to cause physical injury to the person engaging in the behaviour (e.g., tissue damage) (Shkedy, Shkedy, & Norton, 2019). Common forms of SIB include:

• Head banging
• Self-biting
• Self-scratching and/or skin picking
• Self-cutting
• Self-choking
• Self-hitting
• Hitting body parts against hard objects
• Hand mouthing

Autistic persons and those with intellectual disabilities appear to be more likely than those in the general population to engage in SIB. Recent evaluations estimate that 42% of autistic persons engage in SIB; prevalence of SIB amongst those with an intellectual disability has been estimated at 7-12% (Hagopian & Leoni, 2017; Steenfeldt, Jones, & Richards, 2020). Self-injurious behaviour often results in tissue damage and in severe cases, SIB can be life-threatening. The first signs of SIB may appear early in life when an individual is a toddler, but it is possible for the behaviours to emerge later in childhood or adulthood. Self-injurious behaviour is distressing to the person experiencing it and to those who care for them (e.g., caregivers, educators). Additionally, SIB may limit a person’s social connections, community inclusion, and learning opportunities.

Sam is a minimally speaking 14-year-old with a history of self-injurious behaviours, especially to the mouth region. Sam’s teacher has noticed that he has blood in his mouth and seems to be actively trying to pull out his tooth, despite having already lost all his baby teeth. She asks Sam if he is in pain or if he can share why he is pulling at his teeth, but he does not respond. She is concerned that his behaviour is due to him being in distress and calls his guardians. Sam’s guardians have also witnessed him pulling at his teeth and confirm that he has been to a dentist recently and the dentist did not find anything that could be causing Sam discomfort. His latest visit to the paediatrician also did not find anything that indicated he is in pain. The guardians and teacher decide to request a meeting with the school team to discuss other perspectives on the issue.

Key Functions of Self-Injurious Behaviour

To best support the individual, it is important to understand why SIB is occurring. There are many reasons an individual may engage in SIB, ranging from biomedical factors to social or environmental reasons.

Self-injurious behaviour may become more pronounced when an individual is experiencing biomedical setting events such as sleep deprivation, hunger, pain, or physical or mental illness. At times, SIB may help to compete with the pain associated with a biomedical condition. For example, ear hitting may co-occur with an ear infection.

Self-injurious behaviour may occur as a way to increase or decrease sensory stimulation. Autistic persons may experience hypo- or hyperreactivity to sensory stimuli; engaging in SIB may help to address a sensory need. [Insert link to Sensory Processing toolkit].

Often, SIB occurs as a means of communication. Severe problem behaviour such as SIB is not inevitable, though the risk does increase for individuals with severe intellectual and communication challenges (McClintock et al., 2003). Sometimes, engagement in SIB may be the only and/or most efficient means an individual has to communicate a want or need.

It is important to keep in mind that there are often multiple factors influencing the occurrence of SIB. For example, a person may engage in SIB both to avoid an unpreferred task and to access a different activity. Alternatively, SIB may develop due to ‘accidental’ learning. For example, a person may initially engage in SIB to decrease physical pain due to a biomedical cause but learn that SIB also results in other environmental changes, such as caregiver attention or avoidance of an unpleasant situation.

Self-injurious behaviour should not be considered manipulative; rather, it should be recognized as both communication and an indication that the person may benefit from assistance from a professional. It is possible that some other repetitive stereotypic behaviours (e.g., excessive hand mouthing) can result in tissue damage, but these are considered to be distinct from SIB as they are not an attempt to communicate or respond to a biological cause.  SIB is distressing both to the person and those around them; compassionate support should be provided to both the person and their caregivers. 

Determining the Factors Contributing to Self-Injurious Behaviour

It is important to identify why SIB may be occurring to inform decisions about which strategies might be helpful. Consider the following questions:

• Is it possible the person is experiencing physical discomfort? (e.g., headache, gastrointestinal discomfort; illness; hunger; fatigue; pain)
• Are there any uncomfortable or unusual environmental stimuli present? (e.g., sounds, tactile sensations, change in light)
• What is the person trying to communicate?
• What happened immediately before the SIB occurred? (e.g., unexpected change; interrupting a favourite activity; denial of request)
• Were there any precursor behaviours that occurred before SIB that indicated distress or frustration? (e.g., requests or statements; loud or angry vocalizations; gestures; attempts to leave the situation)
• Who was present?
• How did those present respond to the SIB?
• Identify temporal relationships: Does the SIB occur more in the morning vs afternoon or form a cyclical pattern across the week/month?

It may be helpful to record notes about what happened before, during, and after SIB occurred, the time of day it occurred, who was present, and the setting in which SIB occurred. Written records are often more accurate than recollections of an event. A downloadable record sheet can be found here. You may also consider recording videos of SIB to share with your physician and clinical team, particularly if they are unable to observe the behaviours themselves. These notes and videos may help you and your treatment team in identifying patterns in the occurrence of SIB and better understand what the person is communicating.

At the meeting, Sam’s teachers, educational assistants, SLP, OT, and parents compare observations about when they notice he is most likely to pull at his teeth. Sam’s teacher has noticed that he seems to have the most trouble on school auditorium days. She also recalls that Sam has trouble siting still and focusing when the classroom is noisy. Sam’s SLP mentions that he struggles with telling time he doesn’t seem to understand how long he has to wait for one activity to end and another to begin. His OT also shares that Sam seems to be extremely sensitive to loud noises and displays signs on anxiety when in crowded areas. His self-soothing behaviour in those instances is to fidget or walk around the edge of the classroom. The group agrees that an outside opinion would be helpful in determining the purpose of the behaviour and how best to modify the environment to cause Sam less distress. It is decided that the next step will be a calling a trained professional to weigh in on the issue.

Action Plan: Consulting Professionals

Consult with a medical professional to assess underlying medical conditions that may be contributing to the occurrence of SIB. You may want to consider exploring the other suggestions below while the doctor assesses your child any physical health issues.

Meet with a clinician to discuss your concerns. Your clinician may be a Board-Certified Behavior Analyst or a behaviour consultant. The clinician may conduct a functional behaviour assessment to determine why the SIB is occurring. A functional behaviour assessment generally includes a 1) comprehensive interview with family members and those familiar with the child; 2) identifying the behaviour of concern and the contexts in which it occurs; 3) the development of a hypothesis about why the behaviour is occurring; and 4) the development of a comprehensive support plan based on the hypothesized function of the behaviour while focusing on safety, antecedent management, environmental response, teaching communication and other relevant skills, and other positive supports.

A functional behaviour assessment is an important step in addressing SIB because it helps a support team to better understand why the behaviour is occurring. Understanding the function of a behaviour increases the likelihood that a safe, compassionate, and effective support plan will be developed.

The school requests that the school psychologist for the district come and do a functional behaviour assessment on Sam on an assembly day. She also reviews the notes of the previous meeting and makes calls to members of Sam’s team to ask follow-up questions. During the assembly, she keeps a close eye on Sam and notes that he seems to be more stressed as the presentation goes on.

From Sam’s perspective, when he is in crowded places his chest feels like a balloon of pressure is building and he becomes frustrated. He becomes easily overwhelmed trying to process the words that he is hearing and usually he can only focus for a few minutes. Sam would like to get up and run or to have something to draw on or fidget with so that he can burn off energy but doesn’t know how to ask for what he needs. Because he feels like he is not allowed to stand up or fidget during the assembly, he uses that frustrated energy to focus on pulling a tooth.

Treatment and Support Services

*Note, AIDE Canada does not promote any one specific approach or treatment over another, and this document is not intended to be medical advice. Please consult a professional to make an informed decision on how to best support your family member.*

Self-injurious behaviour is commonly treated with medical and behavioural interventions that are augmented by other professional supports. It is important that SIB treatment be individualized and monitored by a team with specialized training. We provide an overview of common interventions for SIB below.

One aspect of treatment options that is important to highlight is that often the SIB is not prioritized until it overshadows all other aspects of the person’s life. For instance, a child’s SLP may have a stated goal of the child being able to say a complete sentence to communicate their needs, but the biggest issue in the child’s life is the SIB that is escalating, and the child does not have the tools to communicate that they are upset before the SIB begins. Addressing SIB should be the primary goal.

Medical Treatments

1. Treatment of underlying medical and dental concerns. Given that SIB can be a symptom of underlying pain or discomfort (e.g., headaches, urinary tract infections), those who engage in SIB should be screened for potential medical or dental concerns at the outset of treatment.
   
2. Pharmacological treatment. The physiological causes of SIB are not well-understood. The use of psychiatric medication is not only used to the treat symptoms of SIB that are not well understood, but more often the existing comorbidities such as ADHD, depression, anxiety, OCD, etc.  Medication is generally focused on symptom-reduction and guided by clinical judgement of the prescribing physician/psychiatrist. Selection of pharmacologic treatments is highly individualized, and treatment is closely monitored.

Behavioural Treatments

Board-certified behavior analysts (BCBAs®) and behaviour consultants work collaboratively with the person affected by SIB and their caregivers to develop a comprehensive behaviour support plan. Behaviour support plans typically focus on promoting safety, arranging the person’s environment to reduce the likelihood of SIB, a consistent and therapeutic response to SIB, and teaching new skills. A comprehensive behaviour support plan may include the following components:

1. Antecedent strategies (prevention). If a functional behaviour assessment or functional analysis identifies clear triggers for SIB (e.g., presentation of a learning task, discontinuing preferred activities), modifications can be made to a person’s environment to prevent SIB. Examples of common antecedent strategies include:

• Providing choices
• Reducing or eliminating aversive sensory input (e.g., bright lights, loud noises)
• Reducing the difficulty of tasks that evoke SIB
• Enriching the person’s environment with enjoyable activities
• Coaching those around the person to provide a different quality of social interaction or more frequent attention
• Coaching those around the person to use visual supports and/or follow predictable routines
• Coaching those around the person to recognize and respond to early indicators that the person is unhappy, distressed, or has unmet needs

2. Teaching strategies (skill-building). Following a functional behaviour assessment, clinicians may teach new skills to replace SIB and/or reduce the need to engage in SIB:

• Functional communication training (FCT). Functional communication training can be used to establish alternative and efficient communication between the person engaging in SIB and those around them (caregivers, teachers, etc.). Functional communication training involves replacing SIB with an alternative way to communicate wants and needs. For example, if an individual engages in SIB when asked to turn off the T.V., they might be taught to request more time rather than engage in SIB.
  
• Teaching coping skills. After a person has a safe and effective way to communicate their wants and needs, clinicians may recommend teaching a variety of coping skills. Teaching toleration skills can help a person who engages in SIB cope with the disappointments and frustrations encountered in daily life. For example, a child may be taught coping strategies that help them tolerate waiting while their parent prepares a favourite meal.
• Teaching other skills that support a reduction in SIB. Different skill-building strategies will be appropriate for each person experiencing SIB. Together, an interdisciplinary team can identify skills that increase a person’s autonomy and independence.

3. Other function-based treatments. A BCBA® or positive behaviour support clinician can work with a person and their caregivers to develop a variety of function-based interventions.

Other Treatments

1. Speech-language therapy. Speech-language pathologists are experts in speech, normal and disordered language, social interaction, verbal and nonverbal communication, feeding, and functional communication. Speech-language pathologists support the development of social and communication skills including (but not limited to) augmentative and alternative communication.
   
   
2. Occupational therapy. Occupational therapists evaluate and provide support in the areas of sensory-processing, physical health, and social-emotional health.
   
   
3. Protective equipment. When there is a serious risk of life-threatening injury, it may be necessary to use protective equipment to prevent injury, at least temporarily. Protective helmets, sleeves, and other equipment can reduce or eliminate the risk of injury from severe SIB. The use of protective equipment varies with each individual and should be under the direction and supervision of a BCBA and/or OT.

After speaking with the team and observing Sam in the assembly, the school psychologist recommends that Sam should be given something to draw on or a fidget toy to use quietly in class and noise canceling headphones to help him focus. Sam’s teacher will also use a visual aide that shows how much time there is left in an activity so he can see how long he needs to sit for. Sam’s guardians agree that he should be given one break pass if he needs to get up and move either at the back of the auditorium or class. Now that Sam has strategies in place, he has been more successful sitting through classes and auditorium days. Because he has a safe and productive way to use his energy, and a visual aid to show how long he needs to wait, Sam isn’t pulling at his teeth anymore.

Conclusion/Summary

Treatment of SIB is complex and requires individualized, comprehensive treatment lead by an interdisciplinary team of professionals with experience and training in in the treatment of SIB.

Caring for a person who engages in SIB can be challenging and isolating. It is important that people with SIB are supported by a wrap-around team of caregivers and professionals with expertise in treating SIB. Similarly, it is important that caregivers are supported with a range of services that might include respite care and mental health services.

Self-injurious behaviour is not inevitable; there are a variety of treatment approaches that can reduce the frequency and the severity of SIB. Caregivers are encouraged to connect with professionals to access the specialized support needed to address SIB.

Finding Help

It is important to ensure that professional(s) have specialized training and experience treating SIB. Consider the following questions when meeting with potential clinicians:

• What are the clinician’s credentials?
• What specialized SIB training has the clinician had? What are the limits to their training? Are there any behaviours they would not be comfortable treating?
• Does the clinician work collaboratively with interdisciplinary teams?
• What is the clinician’s process for obtaining informed consent/assent?
• What are the clinician’s priorities when treating SIB?
• What steps does the clinician typically follow to assess SIB and develop a support plan?
• How does the clinician incorporate the person’s strengths and interests into support planning and skill building?
• How will progress be assessed?
• How frequently will the clinician be available to meet with you?

The table below provides an overview of professionals who might be involved in the treatment of SIB and how you might access their services.

References and resources in a separate document available here.